A woman in her early 70s was brought to our memory clinic by her husband who was in his 80s. She had severe Alzheimer’s and was unable to describe her symptoms.
The husband was her main caregiver. He started describing how his wife’s condition is getting worse as she is now totally dependent on him for self care.
They live in their own small house next to their son’s villa who brings them meals and his wife helps the patients with showering but the rest of the elderly couple are on their own.
The husband stopped praying in the masjid because it’s not safe to leave her alone in the house and when he goes shopping she stays in the car.
“We don’t have a conversation any more, she just stares at me and smiles, it’s like I lost her already while she is still alive, I worry about her when I die, I wonder if it’s better that she gets into a care home”.
I was shocked to hear this. I thought he was coping well but it seems he is stressed out.
“She is unable to shower now and I cannot help her anymore, she can’t wash after using the toilet, she wakes up confused in the middle of the night wanting to go to the farm and it’s pointless telling her that we sold the farm many years ago”.
This was a glimpse of what family members of a person with Alzheimer’s experience on a daily basis. How this devastating disease erases the person’s memory and makes him totally dependent on others, as described by one caregiver “ like a child who doesn’t grow up”.
The situation is even worse for caregivers who are elderly themselves and have their own health issues so they find it physically and emotionally draining to provide care.
In many cases the caregiver chooses to suffer in silence so they don’t burden other family members who assume that the caregiver is managing well, or they have their own way of grieving the person who is gradually fading away in front of their eyes.
How Alzheimer’s steals the person and transfers him or her to someone who is unable to reciprocate emotions or at times hostile to the family he was caring about and he was well because he was no longer able to recognise them.
Sometimes caregivers lose patients or simply feel drained out and shout or lash out to the person with Alzheimer’s, not because they are bad people or they stopped caring but because they are tired and exhausted and they are losing hope so it’s important to watch for symptoms of abuse or neglect which can be difficult to detect since the victim is unable to express themselves.
In my opinion, it’s time to provide more social care inputs so caregivers can do their jobs well while keeping their own mental wellbeing. This is the only way to preserve the dignity of the person with dementia and address their basic needs.
I understand the stigma related to care homes but in some cases it may be a practical option to consider when care at home fails. It is pointless hiding behind social values and cultural beliefs when the person suffering is being judged by people who know nothing about his daily struggles, so let’s address the needs of the caregivers and avoid stigmatising and accusing them.
